Stigma of TB still stings patients

She had many things that gave her an edge in the marriage market. But Sudha Aiyar (name changed) had to face the trauma of a broken engagement, and is yet to find a life partner. Thanks to her honesty.

A professional degree from abroad, a high-paying job, good looks and a heavy bank balance.

She had many things that gave her an edge in the marriage market. But Sudha Aiyar (name changed) had to face the trauma of a broken engagement, and is yet to find a life partner. Thanks to her honesty.

Infected with tuberculosis while working in Hong Kong, Sudha decided to tell her fiancé and in-laws the truth rather than hide the fact as advised by her parents. Despite repeated assurances from her doctor that she would have no trace of the illness in a few months, her fiancé decided to call it quits.

“I was hurt when her in-laws dumped her,” said Dr Amita Nene, chest physician and TB specialist at Bombay Hospital. “She was honest, yet she went through this pain.”

Societal attitudes have changed to an extent, but the stigma is yet to go away. Patients request me to hide it from their own families; young unmarried girls don’t want to tell their future in-laws. While we understand their concern, given the stigma, it makes us fear what would happen if they found out,” he said.

Doctors contend that the stigma associated with tuberculosis needed to be dealt with more effectively as the biggest killer disease in the country is also a major reason for broken homes and abandoned women.

“Although treatment is the biggest challenge, stigma is another aspect that needs to be dealt with,” said Dr Zarir Udwadia, chest physician at Hinduja Hospital. “Unfortunately, there aren’t many initiatives to provide education or eradicate stigma, given the socio-economic burden that TB represents. We come across so many cases where families are broken and economic opportunities are lost. Yet the emphasis is only on treatment, not on counselling or education.”

Studies conducted by the Tuberculosis Research Centre in Chennai said that the fear of becoming homeless and social isolation lead three-fourths of women ultimately diagnosed with TB to initially dismiss their constant coughing as seasonal.

“I have counselled people who didn’t want to confront the problem despite knowing they had TB,” said Dr Amita Athavale, head of chest department at KEM Hospital. “In some cases, health workers were turned away by irate patients who feared ostracism.”

She said that in cases where families were supportive, patients recovered faster.

“When families are involved, not only is the dropout rate lower because of constant monitoring, but it helps in building patients’ immunity as their stress levels are lower. Focusing on creating a supportive family environment can be a strategy to help tackle the dropout rates of TB programmes,” Athavale said.